Alzheimer’s disease is a chronic, progressive, and debilitating health condition. The number of people with the disease is progressively increasing in all countries including Iran. The aim of the present study was to investigate knowledge about Alzheimer’s disease among individuals going to neighborhood houses located in northern regions of Tehran, Iran. This descriptive study was conducted with 656 individuals who aged 50 or more. The sample was selected using a cluster random sampling method. The Alzheimer’s disease Knowledge Scale was used for data collection. The SPSS software (v. 20.0) was used for data analysis at a significant level of less than 0.05. The mean score of the participants’ age was 57.57±6.86 and most of them were female (71.1%). The mean score of the participants’ knowledge about Alzheimer’s disease was 17.47±3.11. The highest percentage of correct answers was related to the items of the life impact dimension of the scale (71.70%) while the lowest percentage was related to the care giving (48.94%) and the risk factor (40.10%) dimensions. Knowledge about Alzheimer’s disease was significantly correlated with the participants’ educational level, experience of care giving to persons with the disease, familiarity with such persons, receiving information about the disease, employment in healthcare settings, and the type of employment (P< 0.05). The findings of the present study revealed that the participants had a limited knowledge about Alzheimer’s disease, particularly about its risk factors and care giving. Developing and implementing appropriate public education programs can enhance people’s knowledge about the disease and reduce its negative consequences.

Introduction

Due to medical advances, life expectancy for human has gradually increased from 48 years in 1950 to 68 years in the first decade of the present century and is estimated to reach 76 years by 2050 (1). Increased life expectancy has increased the population of elderly people and the rate of age-related health problems such as Alzheimer’s disease (AD) (2). Currently, more than 40 million people in the world suffer from AD and other types of dementia. This value will double by 2030 and treble by 2050 (3). In Iran, the number of AD sufferers is currently 300000–450000 (4) and the prevalence of the disease is progressively increasing like other countries (5).

As a chronic and degenerative brain disorder, AD is the most common cause of dementia (6). Dementia is characterized by the loss of memory, language problems (difficulties in speaking and understanding), and poor problem solving ability, poor cognitive skills, and inability to efficiently perform activities of daily living (7). In addition, AD and other types of dementia are among the major causes for disability and death in old ages. Consequently, it is currently considered as one of the major public health problems throughout the world (8).

Gaining knowledge about AD and its consequences is of paramount importance because it has considerable effects on the prevention, diagnosis, and management of the disease. It also helps families, healthcare providers, and other caregivers effectively cope with AD sufferers’ behaviors and relieve the physical and psychological burden of care giving (9). Moreover, it provides caregivers with the opportunity to verbalize their ideas, wishes, and fears and get prepared for dealing with the needs and future plans (10). Knowledge also facilitates the identification and use of the available facilities and equipment, early call for help (11), and effective planning for care before the exacerbation of symptoms (12). In fact, caregivers with greater knowledge about AD are more competent in calling for and seeking help and hence, can diagnose the disease and start its treatment more quickly (13). Accordingly, knowledge enhances the chance for effective management of the disease (5, 14, 15). On the other hand, lack of knowledge increases individuals’ susceptibility to AD and can lead to symptom exacerbation (13). Due to the importance of AD and other types of dementia and the significant role of knowledge in coping with them, World Health Organization has considered public education about AD as one of the most important public health policies which need to be included in national health programs (14).

An absolute prerequisite to public education about AD is to know the level of individuals’ knowledge about AD and determine their educational needs (17). Many studies have been conducted in different countries in order to determine individuals’ level of knowledge about AD and their AD-related educational needs (10, 18-24). Almost, all these studies have shown that people have limited knowledge about AD. However, the level of knowledge about AD varies in different communities. Therefore, the present study was conducted to investigate knowledge about AD among individuals going to neighborhood houses located in northern regions of Tehran, Iran.

Materials and Methods

This descriptive study was conducted on individuals who go to neighborhood houses located in northern regions of Tehran, Iran. Based on a confidence level of 0.95 and a d of 0.5, the results of the sample size calculation formula ( ) revealed that a sample of 625 individuals is needed. In the standard deviation based on 100 was calculated 17 ( → ). However, we expanded the sample size to 656 in order to enhance the rigor of the study. Study participants were recruited through multistage cluster sampling. The clusters were the northern regions of Tehran which included the northwest, northeast, and middle north regions. Primarily, two regions (or clusters) were selected randomly. These regions were the northwest and the middle north regions. Then, four neighborhood houses were randomly selected from each of these two clusters. The sample size for each clusters was considered the same (656/2=328). In each regions, the sampling method was stratified and proportional. In other words, based on the total number of individuals going to each of these four houses in a region, the number of individuals which should be recruited from each house was determined.

Finally, in each neighborhood houses, participants were recruited through convenience sampling in September 2015 to April 2016. They were included if they aged 50 or more, were able to read and write Persian, and had no cognitive problem. They were deemed to have no cognitive problem if they obtained a score of 7 or more from the Persian version of the Abbreviated Mental Test (25).

Instrument

The data collection tool consisted of a demographic questionnaire and the Alzheimer’s Disease Knowledge Scale (ADKS). The demographic questionnaire was developed based on the results of our brief literature review and included the following eleven items: 1. Gender, 2. Age, 3. Marital status, 4. Educational status, 5. Employment status; 6. Have you ever been employed in healthcare settings? 7. Do you have a relative suffering from AD? 8. Have you ever provided care to an AD sufferer? 9. If yes, determine the length of care giving. 10. Have you ever received any information about AD? 11. If yes, please name the source(s) from which you acquired your information.

The participants’ level of knowledge about AD was assessed by using the 30-item ADKS the items of which are responded as either ‘True’ or ‘False’. Correct answers are scored 1, resulting in a total ADKS score of 0–30. The items of the ADKS fall into seven dimensions including risk factors (2, 13, 18, 25-27), assessment and diagnosis (4, 10, 20, 21), symptoms (19, 22, 23, 30), AD course (3, 8, 14, 17), life impact (1, 11, 28), care giving (5, 6, 7, 15, 16), and treatment and management (9, 12, 24, 29). The ADKS is the only questionnaire about knowledge on AD assessment that can be used for all people including the general public, caregivers, and professionals. It takes 10–15 minutes to complete the questionnaire. Carpenter et al. (17) reported that the scale has acceptable content and predictive validity and reliability. The scale was initially translated into Persian through the translation and back-translation technique. Then, the content validity of the Persian version was assessed and confirmed by an expert panel. The test-retest correlation coefficient of the scale was 0.73, denoting its acceptable reliability.

Data analysis

The SPSS software (v. 20.0) was employed to manage and analyze the data. The data were described using frequency distribution tables and descriptive statistics measures such as median, mean, and standard deviation. Moreover, the independent-sample t test, the one-way analysis of variance (ANOVA), and the multiple regression analysis were done for data analysis at the significance level of less than 0.05. In order to predict knowledge value based on these variables, multiple regression analysis was performed by using the Enter method.

Ethical considerations

This study was approved by the Ethics Committee of Iran University of Medical Sciences, Tehran, Iran (Ethical code: IR.IUMS.REC.1394.9211508206). Participation in the study was voluntary. The participants read and signed the informed consent form.

Results

The data collected from 656 participants were included in the final analysis. Most of the participants were female (71.1%) and married (77.4%). Most of them (67.1%) had an age of 50–59. The findings revealed that 50.7% of those with previous AD-related information had received their information from lay persons (such as family members, friends, and relatives), 70.9% from the media (radio, television, books, magazines, newspapers, internet, or movies), 8.8% from scientific sources (such as scientific databases, journals, or research seminars), and 14.8% from healthcare providers.

The mean of the participants’ knowledge about AD score was 17.47±3.11. The highest percentage of correct answers was related to the life impact dimension while the lowest percentage was related to the risk factors (40.10%) and the care giving (48.94%) dimensions, respectively (Table 1). Figure 1 shows the percentages of correct answers in all ADKS dimensions.

The results of the independent-sample t test illustrated that the mean knowledge score of the participants who had the experience of working in healthcare settings was significantly higher than those participants without such an experience (P= 0.002), even though this difference was as small as 0.97 point. Moreover, the knowledge score was significantly correlated with having an AD sufferer among significant others, having an experience of care giving to an AD sufferer, and receiving AD-related information (P=0.001). The mean knowledge score of those participants who met one or all of the abovementioned criteria was significantly higher than those who did not meet the criteria. Although the difference was statistically significant, it was as small as 1.36–1.60 (Table 2).

The one-way ANOVA and independent t- test also indicated that the knowledge score significantly correlated with the participants’ employment and educational status (respectively P=0.019, P<0.001) while it did not correlate with age, gender and marital status. The results of multiple regression analysis revealed that, compared with unemployment status, retirement status and being a housewife had significant correlations with knowledge. Moreover, compared with under diploma educational status, diploma and academic educational status were significantly correlated with knowledge about AD (Table 4).

Discussion

This study was conducted to investigate knowledge about AD among individuals going to neighborhood houses located in northern regions of Tehran, Iran. The findings showed that the knowledge about AD was slightly higher than the median score of the ADKS. This finding contradicts the findings of some previous studies and denotes that the participants had limited knowledge about AD. Carpenter et al. (20) used the same instrument and found that the mean knowledge score of American elderly people was 24.10±2.95, implying great knowledge about AD. The results of a study in Britain also showed that, on average, more than 80% of the participants had provided correct answers to two third of the ADKS items, resulting in a higher mean knowledge score than the ADKS median score (26). Moreover, the level of our participants’ knowledge about AD was lower than the Chinese Americans aged 55 or more (27). However, our findings were in line with the findings reported by McParland et al. (2012). They found that about half of the individuals aged 55 or more had limited knowledge about AD and other types of dementia. In recent years, comprehensive AD-related programs have been implemented in most developed countries. One of the components of such programs is public education about AD (16). The findings of previous study showed that such programs have positively affected people’s knowledge about AD. They conducted their study after the execution of an AD-related educational campaign in the United States (20). Consequently, our participants’ limited knowledge about AD can be attributed to lack of need-based public education programs in Iran.

Table 1. Numerical index of knowledge about Alzheimer’s Disease and its Domains (The scores are calculated based on 100)

Questions with correct response rates lower that 50% are presented in bold and italics.

Table 4. Multiple regression analysis

Constant value

Coefficient

Standardize coefficient

T

p-value

14.97

-

20.844

<0.001

Educational Statues

(Base on Under Diploma)

Diploma

0.726

0.120

2.351

0.019

Academic

1.545

0.237

4.206

<0.001

Employment statues

(Base on Unemployment)

Housewife

1.461

0.228

2.149

0.032

Retirement

1.802

o.252

2.594

0.010

Administrative

Officer

1.192

0.137

1.674

0.095

Worker

0.913

0.049

0.925

0.341

Privet

1.126

0.130

1.586

0.113

The findings of the present study revealed that the highest-scored dimension of the ADSK was the life impact. After that, the assessment and diagnosis, treatment and management, course, and symptoms dimensions obtained the highest scores respectively while the lowest-scored dimensions were risk factors and care giving dimensions (Fig. 1, Tables 1 and 3). These findings were in agreement with the findings of a study conducted by Hudson et al. (26). They reported that the greatest and the lowest levels of knowledge about AD were related to the life impact and the risk factors dimensions of the ADKS.

The study findings revealed that the lowest percentage of correct answers was related to the risk factor dimension. Carpenter et al. (20), Hudson et al. (26), Lee et al. (29), Smith et al. (30), and Sun et al. (27) also reported people’s lack of knowledge about AD risk factors. Although many people are interested in obtaining information about different aspects of healthy lifestyle (such as dietary regimen, physical activity, social interactions, and prevention of cardiovascular disease), it seems that they have limited knowledge about the relationship of lifestyle with AD. The results of a study in Australia indicated that while Australians were knowledgeable about the importance of prevention and its effectiveness in reducing the prevalence of AD and other dementias, they had limited information about AD risk factors, particularly cardiovascular disease. In other words, they had limited knowledge about the preventability of AD and dementias (9).

Our participants also had limited knowledge about the care giving dimension of the ADKS. Sun et al. (27) also found that Chinese Americans aged 55 or more had not adequate knowledge about care giving. According to Shumaker et al. (31), knowledge about AD and its consequences encourages people to engage in healthy AD-related activities. In other words, people who have accurate information about a certain illness can better understand afflicted patients’ needs and provide effective need-based care. As our participants had limited knowledge about other aspects of AD (such as treatment and management), they might have been unable to identify the best care-related activities and hence, they obtained low score on the care giving dimension of the ADKS.

The findings of the present study also revealed that the percentage of correct answers to the items of the symptom dimension was slightly higher than 50%. Sun et al. (27) also reported that Chinese Americans aged 55 or more had limited information about the symptoms of AD. These findings may be due to the fact that most people consider AD as a part of normal aging and hence, they cannot differentiate AD symptoms from normal age-related memory deficits (18, 23, 29, 32).

The second highest-scored dimension of the ADKS in the present study was the assessment and diagnosis dimension. On the other hand, the results of the present study regarding the treatment and management dimension of the ADKS were also unsatisfactory. Lee et al. (29) also reported Korean Americans’ limited knowledge about AD treatment and considered it as a barrier to seeking treatment and support. In other words, limited treatment-related knowledge prevents individuals from visiting a doctor and undergoing treatments despite having received a definitive diagnosis of the disease. Although there is no effective treatment for AD, people need to be informed that the process of AD-related brain degeneration can be slowed down by some therapies. Due to lack of effective treatments for AD, its early diagnosis is a matter of great controversies. Nonetheless, early diagnosis has many advantages. For instance, it can help in diagnosing other cognitive problems that easily respond to treatments. Moreover, it helps patients make wise decisions about their own future while they are still able to properly use their reasoning and decision making abilities. In addition, it provides patients and families with the opportunity to use accessible treatments and services as early as possible and lightens burden of care giving (33).

This study found that the highest percentage of correct answers was related to the life impact dimension of the ADKS. In addition, our findings revealed that most participants had given correct answers to half of the items of the course dimension while they had given wrong answers to the other items of this dimension Hudson et al. (26) also reported the same findings.

The findings of the present study indicated that the score of knowledge about AD did not significantly correlate with age, gender and marital status. However, the findings revealed that knowledge about AD in the participants who had an experience of care giving to or familiarity with an individual suffering from AD was significantly higher than in the participants who did not have such an experience or familiarity. Previous studies also reported the same finding (10, 20, 22, 26, 28, 34). These kind of findings indicate that being exposed to AD in different situations could improve knowledge about the disease so developing and implementing public education programs (through media, movies, and workshops) can help improve the public’s knowledge about the disease.

The study findings indicated that although knowledge about AD was correlated with the experience of working in healthcare settings, the mean knowledge score in the participants with such an experience was only slightly higher than in the other participants. Previous studies have shown that direct contact with AD sufferers and gaining first-hand experience can expand knowledge about AD (35, 36). In other words, healthcare professionals usually have greater knowledge about the disease compared with others (20, 33). Smith et al. (30) also found that healthcare professionals with higher educational status and higher official positions are more knowledgeable about AD. Apparently, healthcare professionals usually receive educations about AD during the course of their academic education. Accordingly, the small difference that was mentioned above may be due to the fact that individuals with the experience might have included both lay and professional healthcare workers and hence, they might have had different levels of Knowledge about AD.

We also found that although obtaining information about AD was significantly correlated with knowledge about AD, the knowledge about AD score in the participants who had previously obtained information was only slightly greater than in the other participants. Such a small difference may be attributed to the fact that the commonest sources of information used by the participants were lay persons and media. According to Carpenter et al. (20), most people obtain their AD-related information from unreliable sources and hence, they may have inaccurate information about the disease. Consequently, future studies are recommended to evaluate the accuracy of the AD-related information provided by print media, audiovisual media, and the internet. In addition, public education programs which aim at enhancing people’s information retrieval and appraisal skills can substantially improve their health-related knowledge. For instance, in Iran, Iran Alzheimer’s Association can be introduced to people as a reliable AD-related information source.

Because of increasing prevalence, high disability and mortality rate, and great care giving and financial burden of AD, future research may find it useful to explore knowledge in different subsamples of people and to determine their educational needs.

Conclusion

The findings of the present study indicated the participants’ limited knowledge about Alzheimer’s disease, particularly about its risk factors and care giving. In other words, the participants had limited knowledge about AD. The highest level of knowledge was related to the life impact dimension. After the life impact dimension, the assessment and diagnosis, treatment and management, course, and symptoms dimensions obtained the highest scores respectively. The lowest-scored dimensions were respectively the risk factors and care giving dimensions. Moreover, knowledge about AD was significantly correlated with the participants’ educational and employment status, the experience of care giving to person(s) suffering from AD, familiarity with person(s) suffering from AD, receiving information about the disease, and employment in healthcare settings. Given the increasing prevalence, high disability and mortality rate, and great care giving and financial burden of AD, developing and implementing appropriate measures for enhancing people’s knowledge about the disease seems clearly crucial. Need-based educational programs could expand knowledge about AD among participants of this study and thus, can give them an opportunity to reduce the prevalence of AD, postpone its incidence, postpone its initiation, facilitate early diagnosis and help-seeking, reduce the burden of care giving, improve afflicted persons and their families’ quality of life.

Acknowledgements

The authors would like to thank Vida Ghodraty for her assistance with management translate and back translate process of the ADKS. And hereby, the researchers appreciate the research vice-chancellor of the Faculty of Nursing and Midwifery, Social Assistance the first and second regions of the Tehran Municipality Neighborhood Houses administrators, the participated men and women and all who assisted us in doing this research.

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